Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

July 27, 2013

Tonight's picture was taken on July 27 of 2008. Five years ago today, or four days after he was diagnosed with cancer. As you can see here, Mattie was doing one of his favorite things on our deck..... playing in his frog sandbox. Mattie fell in love with sand in preschool, he most certainly did not love it as a toddler! This sandbox is still with us today and it sits in front of our deck door and contains many of Mattie's toys inside. Children who live in our complex come visit and play in Mattie's frog sandbox. This sometimes catches me by surprise, because when children our outside our deck door, I can hear them from inside our home. Fun Fact of the Day: Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did do. So throw off the bowlines, sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover. ~ Mark TwainBon Voyage Southampton as we are on our way to Barcelona! We started the day checking out of the Grant Hotel in Southampton after eating a light breakfast and packing up for the short trip to the cruise terminal to embark the Crown Princess. Anyone who has traveled on cruises knows the special and intense chaos of a “turn-around day”, which is the day when a cruise comes to an end, all the existing passengers disembark, the ship is clean, provisioned and then a few hours later, a brand new round of passengers embark and start their vacations. It is especially hard on the crew who has to say goodbye to the passengers they were caring for, prepare the ship for another journey, and then put on a happy face and greet the next batch of passengers matching their fresh enthusiasm. It’s also not that easy to pack-up at the hotel, check out, take a car to the terminal, direct the baggage, check in, walk the gangway, get on the ship and migrate up to our rooms, but we managed. Having taken almost a dozen cruises now, we are starting the get the hang of it, and the Princess Cruise people go to great lengths to make the whole process as smooth and as idiot proof as possible, which is much appreciated!

Also, this is Peter writing the blog, not Vicki. I know it has been some time (perhaps a few years now) since I last wrote, but I wanted to give Vicki a little break from the daily postings in the hope it will help her a little with the headaches. Our plan is to split up the blogs during the trip with Vicki taking most of the in-port days, and me taking the seven at-sea days (as not a lot typically happens on these days). So that is our plan and we’ll see how it works out!

Once we boarded the ship this afternoon, we were waiting for our bags to be brought up to the room. Mind you, when one arrives at the cruise terminal, the dock staff immediately take your bags from you, which are tagged with your name and cabin information. While you are checking in and walking the gangway onto the ship, a process that can only be described as ballet done on forklifts by longshoreman transpires. It is amazing to watch these workmen coordinate heavy cages filled with luggage, supplies, and other items to be loaded onto the ship, with all the skills and expertise of prima ballerinas and all while operating heavy machinery! It is like watching a beehive or a colony of ants all working together for a common good. The net result is that your bags magically appear at the door of your cabin an hour or two since leaving them on the pier.

So while Vicki was unpacking, I went topside and took several pictures of several common areas of the ship. If you have not been on a large cruise ship you cannot quite appreciate the sheer size, scale and height of these ocean-going behemoths. Vicki says it is amazing the ship can even float, and I agree! The Crown Princess was built in 2006 and is part of Princess’s Grand Class of sailing ships. I will share more specifics about the ship on another day, but you can see in the pictures just how big this ship of 3,000 passengers and 110,000 tons really is!

One of the Pool Areas on the Crown

A View of the Stern looking down

Looking at the top and smokestacks

Just before we set sail, a voice came on the loudspeaker and was making cryptic announcements about a “A-class on deck 10 in sector B” and some other gibberish. We naturally registered this somewhat strange announcement, but it was unclear what it was all about, so we dismissed it. Ten minutes later we went to exit our cabin and our cabin steward Art told us to please clear the hallway as a medical team needed to come down the hallway right past our door. Needless to say we were alarmed, but we quickly put two and two together and figured out that the cryptic announcement we heard ten minutes prior was actually code words for a medical emergency on deck ten (our cabin in on deck ten) just down the hallway. Using the spyglass in the door, Vicki was able to see a young girl in her 20s being rolled past on a stretcher, with an IV and an ice pack being trailed by what appeared to be a sister and a parent. All this was happening about 60 minutes before sailing!

We were glad to see this girl had been stabilized, but it was clear that she and her family were being taken off the ship, and most likely canceling their vacation. Although Vicki and I did not say anything to each other about it at the time, I think we both felt terrible for this girl and her family, in that in one minute everything was wonderful and full of life and excitement, with a pending cruise and the promise of exotic destinations, only to have it all crushed in an instant when a member of their family comes down ill unexpectedly. It reminded me of our situation with Mattie when we were happy and felt like the luckiest people in life, only to have our entire world and life be crushed with a single sentence: “Your child has cancer”. We wish this girl a speedy recovery and her family all the best as their focus turns from cruises and pleasure trips to a hospital and a medical condition. It is amazing how life can change on you in an instant.

Anyway, we set sail at approximately 4:00pm from Southampton under gray skies and a light breeze. We are now passing the Isle of Wight heading towards the English Channel where we are steaming south-southwest to head towards the Bay of Biscay off the coast of France. The captain came on the ship’s speaker system and provided us with several updates regarding our planned course, and already he has warned us of swells and waves once we enter the Bay of Biscay, so that should be interesting to say the least. As Vicki says, “let the rocking and rolling begin!” Fortunately, Vicki has already taken her Dramamine so she has can prevent her seasickness from developing, which explains her somewhat cavalier statement about the waves. As many of you know well, Vicki does not handle motion very well, so I give her a lot of credit for being a real trooper and putting up with airplane flights and fourteen days of sailing the high seas.

Sailing away from Southampton

Southampton Sail-away

Sailing past the Grand Hotel where we stayed in Southampton

The Independence of The Sea leaving Southampton ahead of us

So hopefully this blog post was bearable and that our hundreds of faithful readers will tolerate the guest writer interspersed over the next fourteen days. On a closing note, I have two pictures of Mattie posted in the room, which is something I always do when I travel as a reminder that although Mattie is no longer with us physically, he is always remembered and with us in our hearts and minds no matter where we go.

July 26, 2013

Friday, July 26, 2013Tonight's picture was taken on July 25, 2008, two days after Mattie was diagnosed with Osteosarcoma. As you can see we had Christmas candy cane lights out on our deck. Mind you it was July!!! But this was Mattie's request! He wanted to see lights. He really couldn't articulate why he wanted us to take out the lights from storage and decorate outside, but I suspect decorating with lights was one of the many things he enjoyed doing with Peter. It was their tradition together every November (the day after Thanksgiving to be specific!). Also seeing lights has a way of brightening up our world on dark days. So on some level Mattie understood the grimness of his diagnosis which was amazing considering he was only six years old!

Fact of the Day: Titanic departed from Southampton, England just before noon on April 10, 1912; Captain Edward John Smith steered the ship towards the first port of Cherbourg, France that was about 70 miles away. After its second stop in Queenstown, Ireland, the Titanic set out for New York City, but after approximately 375 miles of travel, sunk on April 14, 1912.

Today we took a 30 minute taxi drive to Portsmouth, England. Portsmouth is the second largest city in the ceremonial county of Hampshire on the south coast of England. Portsmouth is notable for being the United Kingdom's only island city; it is located mainly on Portsea Island. It is situated 64 miles south west from London and 19 miles south east of Southampton.

As a significant naval port for centuries, Portsmouth is home to the world's oldest dry dock still in use and also home to some famous ships, including HMS Warrior, the Tudor carrack Mary Rose and Lord Nelson's flagship, HMS Victory. Although smaller than in its heyday, the naval base remains a major dockyard and base for the Royal Navy and Royal Marine Commandos whose Headquarters resides there. There is also a thriving commercial ferryport serving destinations on the continent for freight and passenger traffic.

We walked to Portsmouth Historic Dockyard and came across a statue of a man with his dog. I must admit the dog caught my attention! The British love their animals and it is NOT unusual to see statues of famous individuals with their dogs!!! This was Captain Robert Falcon Scott. Captain Scott wasa Royal Navy officer and explorer who led two expeditions to the Antarctic regions: the Discovery Expedition, 1901–04, and the ill-fated Terra Nova Expedition, 1910–13. During this second venture, Scott led a party of five which reached the South Pole on January 17, 1912, only to find that they had been preceded by Roald Amundsen's Norwegianexpedition. On their return journey, Scott and his four comrades all died from a combination of exhaustion, starvation and extreme cold.

The plaque under Captain Robert Falcon Scott's statue caught our attention. It read...... Captain Robert Falcon Scott, Royal NavyBorn 6 June 1868 died about 29 March 1912. During his return from the South Pole in his journal found 8 months later he wrote the gale is howling about us. We are weak, writing is difficult but for my own sake I do not regret this journey which has shown that Englishmen can endure hardships help one another and meet death with as great a fortitude as ever in the past. We took risks we knew, we took them. Things have come out against us and therefore we have no cause for complaint by bow to the will of providence determined to do our best to the end.

Right next to the statue was an entrance into Porter's garden. In the garden were beautiful cherry trees (with fruit on them!!!) as well as these great big giant thistle flowers. Peter and I LOVE the thistle, because it reminds us of our honeymoon trip to Britain (in particular Scotland, where we first saw our first thistle).

The garden also featured Lavender. It was incredibly fragrant and filled with bees!

There is nothing quite like an English garden. They just have an absolute understanding for flowers, composition, and scale.

Portsmouth Historic Dockyard has 800 years of history and encompasses the National Museum of the Royal Navy, Action Stations and Harbour Tours.

Situated within a working Naval Base, the Historic Dockyard is the only place in the world to see the Royal Navy past, present and future.

Within the Dockyard sits the HMS Victory. The Victory is a 104-gun first-rateship of the line of the Royal Navy, laid down in 1759 and launched in 1765. She is most famous as Lord Nelson's flagship at the Battle of Trafalgar (Britain's greatest naval victory) in 1805.

Also in the dockyard is the HMS Warrior. She is anarmored frigatebuilt for the Royal Navy in 1859–61. She and her sister shipHMS Black Princewere the first armor-plated, iron-hulled warships; they were built in response to the first ironcladocean-going warship, the wooden-hulled French ironclad Gloire, launched in 1859. Warrior made a publicity tour of Great Britain in 1863 and spent her active career with the Channel Squadron (She never fired a shot in anger, yet changed naval warfare forever!). The ship was paid off in 1883 after having been in 1st class reserve since 1875. She served as a store ship and depot ship before she was assigned to the Royal Navy's torpedo training school in 1904. The ship was converted into a floating oil jetty in 1927 and remained in that role until 1979 when her eight-year restoration began. Listed as part of the National Historic Fleet,Warrior has been a museum ship in Portsmouth since 1987.

The third famous vessel sitting in dry dock in Portsmouth Historic Dockyard is the HMSM33. M33 is an M29-classmonitor of the Royal Navy built in 1915. She saw active service in the Mediterranean during World War I and in Russia during the Allied Intervention in 1919. She was used subsequently as a mine-laying training ship, fueling hulk, boom defense workshop and floating office, being renamed HMS Minerva and Hulk C23 during her long life. She passed to Hampshire County Council in the 1980s and was restored to original condition and is now located at Portsmouth Historic Dockyard. She is one of only three surviving Royal Navy warships of the First World War.

Within the Dockyard complex, a new museum is currently being built. A museum that will tell history through personal stories. Which for a person like myself, this is the best way for me to learn and remember history. This museum opens in 2014, however, outside of the complex where the museum is being built are promotional posters. This is one that caught my attention. Why? Because of Scatters the Cat!!! The poster reads..... "Scatters, the pet cat of the battleship HMS Dreadnought."

After touring around, we walked to the Gunwharf Quays (Quays is pronounced KEYS) Marina. While at the marina, we heard incredible live music being performed by the Royal Marines Band Service. This Band is famed throughout the world for their immaculate appearance, drill and musicianship, the bandsmen and women of the five Royal Marine bands combine military precision and discipline with an artistic interpretation that places them in the top level of musical ensembles.

This was my view at lunch!!! Gunwharf Quays was an important part of the Portsmouth Naval dockyard in the days of sailing ships. Sailing ships required periodic checking and maintenance (and often repair after a naval battle). This often necessitated the ship being placed into a dry dock. However, a ship could not be placed in dry dock with its guns on board as the weight would severely damage the wooden structure once the support of the sea water was lost and the keel took all the weight of the ship and its contents. The ship would offload all of its guns at one of the Gunwharf Quays before being dry docked. As ships and armaments developed, the requirement to offload the armament diminished, and the Gunwharf Quays fell into disuse. On February 28, 2001, the Gunwharf Quays was developed and transformed into an open air complex filled with shops and restaurants.

Along our walk through the streets of Portsmouth, we were greeted by wonderful English architecture... famous for their decorative half timbers!!! No building is complete without flowers either.

It would be impossible to miss this tower, which is incorporated in Portsmouth's skyline! Spinnaker Tower is a 560 ft landmarktower in Portsmouth. It is the centerpiece of the redevelopment of Portsmouth Harbor. The tower, is the tallest accessible structure in the United Kingdom outside London. The tower is visible for miles around Portsmouth, changing the horizon of the area. The tower represents sails billowing in the wind, a design accomplished using two large, white, sweepingsteelarcs, which give the tower its spinnakersail design.Though we are all a bit jet lagged and frankly I still don't know what day or time it is, we accomplished a lot today. Tomorrow we board our cruise ship. However, as is typical for us, we never have an uneventful day. Actually I would describe the taxi ride from Portsmouth back to Southampton as harrowing or down right frightening. I would say about five minutes into the drive, I realized that the driver was unstable mentally. He was talking to himself, not in touch with reality, and would only drive 35mph on a fast moving highway. There were many other oddities. So much so that Peter was tracking him with his GPS app on his i-phone and Peter and I were text messaging back and forth in the taxi, because we felt we needed a plan on how to manage this horrific car trip. Thankfully we arrived back safely and I consider that no short of a miracle.

July 25, 2013

Tonight's picture was taken on July 25 of 2008. Two days after Mattie was diagnosed with cancer. I will never forget this day. Why? Because July 25th is my birthday. We were all so traumatized after Mattie's diagnosis, which is why I suspect there is a lot of sadness and emotion wrapped up with my birthday even today. I truly do not like celebrating my birthday anymore. Not because I am getting one year older, but because in my mind I am transported back to the scene in this photo (and of course am reminded of the feelings of fear and terror of having Mattie diagnosed with a life threatening illness). You may notice Christmas lights behind us. Typically we do not have Christmas lights on our deck in July. But after Mattie was diagnosed, he requested that he be surrounded by Christmas lights. It certainly wasn't a request we were going to deny. So out came the Christmas displays and lights and Peter snapped a photo of us together for my birthday.Fun Fact of the Day: The number of passengers arriving and departing per day at London's Heathrow Airport is 191,200.

Peter and I flew to London yesterday evening. It is hard to believe that our flight left on Wednesday at 6:30pm Eastern Standard Time and arrived on a totally different continent on Thursday around 12:15am (Washington, DC time). London is five hours ahead of DC and I feel like an absolute zombie. I was truly amazed to see that practically everyone was asleep on the flight over to London. My joke was the only people wide awake were me and the pilot! There is no sleeping for me on a plane and with every jolt of turbulence, I grow more and more concerned and uneasy. In fact, by the end of the flight, I had a death grip on Peter's wrist (which I wasn't aware of until he pointed it out to me) and I was practically humming or chanting that the flight had to be over. Thankfully we landed safely, as did my parents. If you don't share my fear of flying, I imagine this all sounds truly far fetched! But for me it is very real!We spent part of the day walking Southampton. We visited Southampton last summer as well and it is interesting to see some of the town's changes in just one short year. I am exhausted (I fell asleep several times while typing!) but before signing off on the blog I wanted to end tonight's posting with a birthday wish from my mom.

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A Remembrance of an Unforgettable
Teacher by Virginia R. Sardi

On Monday,
July 15, as I was listening to the news of the day, an announcement was made
concerning the impending 17th anniversary of the downing of TWA
Flight 800 in New York on July 17th 1996. It struck me as chilling
that so much time had elapsed since that horrendous loss of life and that there
were still so many unanswered questions about what really brought down that
plane. No doubt this tragic event impacted the psyche of all Americans and for
those who had family or friends aboard that fateful flight, the tragedy of their
great loss became a formidable reality.Our family indirectly suffered too but not because a member of the
family or a personal friend was aboard the aircraft, but because of the loss of
a wonderful teacher, Lois Van Epps, who was Vicki’s English teacher at Edgemont
High School in Scarsdale, New York.

In my mind,
she had a profound effect on Vicki and her intellectual development in subtle
but most encouraging ways. Her Dad and I already knew that Vicki did not
gravitate towards things mathematical.She
was always the artistic and creative one who could be depended upon to
choreograph dances that were good enough to be performed at school events. She
liked to sing and was always a member of the school choir.In our community Vicki had a reputation of
taking part in many dance programs which she danced and choreographed although
only a ninth grader.She auditioned for
The Gifted and Talented Performing Arts Program for high school students underwritten
by New York State to promote the arts. She won a four year scholarship and
studied at SUNY for one year. She never completed the program because our
family moved to California. That year gave her an abiding lifelong interest in
ballet and an appreciation of what it takes to achieve professional status as a
ballet dancer.

But it took
Lois Van Epps to point out that Vicki was a gifted writer who had what it took
to become a professional writer if she pursued her interest in writing as a career.
She explained that she had a talent for expressing herself in words where other
students struggled to translate their thoughts into words that were logical and
meaningful.She thought Vicki was very
imaginative and was impressed with her submission of a Gothic murder mystery
which was an assignment she had given her class. She thought this talent would
evolve as Vicki matured and zeroed in on the direction her life took.Little did Lois Van Epps imagine the
blogosphere in 1996 but if she were here today with us, she would not be
surprised at the awesome blog that Vicki has created upon the death of her only
son, Mattie in his memory. She knew that Vicki felt deeply about people, their
emotions and how the events of life impact lives.Although Lois Van Epps is not with us today,
her prescient prediction that Vicki was a budding writer was right on target
and should be part of the historical record of Vicki’s blog for Mattie!

Therefore I
conclude, Lois Van Epps will always be remembered fondly for recognizing one of
Vicki’s greatest talents which is her ability to communicate heartwarming
advice and share her feelings about life’s vicissitudes with hundreds of people
through the power of her words!!

July 24, 2013

Wednesday, July 24, 2013Today's picture was taken on July 24 of 2008. The day after Mattie was diagnosed with cancer. It is hard to believe this photo was taken five years ago today and that Mattie is no longer with us. Art became an important part of our lives while Mattie was battling cancer. It was therapeutic for all of us. In fact the boat you see floating in our tub, was the first art project Mattie created in the cancer clinic at the Hospital. While Peter and I were meeting with Mattie's oncologist and trying to wrap our heads around his treatment plan that day, Mattie worked with Jenny and Jessie (his art therapists) and built this boat. You wouldn't believe how many pieces of art Mattie created while battling cancer. I would say we are talking hundreds of pieces and so many were beautifully on display during Mattie's celebration of life reception. In fact, during Mattie's celebration of life event there were two rooms devoted to just his art, it almost felt like you were walking into an art show. That is how prolific Mattie was while dealing with cancer!Quote of the day: One’s destination is never a place, but a new way of seeing things. ~ Henry Miller

This may be a first.... I am posting the blog early in the day. Peter and I leave for London today and the notion of flying makes me very uneasy and almost physically sick. So it will take whatever energy I have to keep it together for almost an eight hour flight. Nonetheless, I am reflecting on Miller's quote and I know Peter and I could certainly could use a "new way of seeing things." The next time you hear from me, I will hopefully be in England. I know several of you have already emailed me about awaiting photos each day from our trip. I promise not to disappointment and you may actually hear from Peter as well while we are away!

July 23, 2013

Tuesday, July 23, 2013 -- Mattie died 202 weeks ago today.Tonight's picture was taken on July 25 of 2008. Two days after Mattie was diagnosed with cancer. To me, this photo will always remind me of the level of fear, anxiety, and stress we were living under during the first month after Mattie was diagnosed with cancer. I recall these feelings SO well, as if they were yesterday. After Mattie's diagnosis, I developed my first clinical signs of anxiety. Anxiety which remains with me today. I recall I could hardly breathe at times, I couldn't sleep, or eat. I was just living in a constant state of hyper arousal. Seeing this photo maybe perplexing since Mattie was diagnosed in July, and typically one does not have Christmas lights outside in the summer. But after Mattie was diagnosed he requested that we decorate as if it were Christmas time. At that point whatever he wanted, he got, and the task of putting up lights was a welcomed diversion from our thoughts. As I look at this photo now, I acknowledge the simple fact that Mattie was scared. Typically when Mattie was scared he would jump into my arms, just like you see here.Quote of the day: If I had lost a leg, I would tell them, instead of a boy, no one would ever ask me if I was ‘over’ it. They would ask me how I was doing learning to walk without my leg. I was learning to walk and to breath and to live without Wade. And what I was learning is that it was never going to be the life I had before. ~ Elizabeth EdwardsDo you know what you did and where you were on July 23 of 2008? STOP, think about it a minute!!! Most of us can't remember what happened to us last week, much less five years ago TODAY! However, I wish I could say the same thing. Unfortunately I can't. I know vividly what I was doing and where I was. It is an infamous day in which I innocently took Mattie to his pediatrician's office at Virginia Hospital Center. I was sure Mattie pulled a muscle or had a sprain in his arm from tennis camp. Never realizing that neither were a possibility. Thankfully Mattie's pediatrician took the complaint seriously and ordered an x-ray that day. Mattie and I walked from the pediatrician's office to the Hospital's radiology department. I recall the x-ray tech taking a VERY long time with Mattie. He kept repositioning him and taking additional films. I never thought twice about this, I just assumed Mattie was squirming and therefore the x-rays were unclear, therefore needing multiple scans. NAIVE!!! After the x-rays were taken, the tech told me to go wait in a room with Mattie. Again, I never thought twice about that either. I will never forget this holding room. Why? Because we were surrounded by three other people. All older than me. There was NO hospital personnel in the room with us. Just patients. While in this holding room, the phone in the room rang. NO ONE answered it. So I went to pick it up. It was the radiologist who evaluated Mattie's scans and he told me to report right back to the pediatrician's office. I did not like the way he sounded on the phone, so I interrogated him further. He told me it was best that I hear the news from Mattie's doctor. At that point, I practically snapped his head off. I told him I wasn't leaving the holding area without more information. It was then that the radiologist told me Mattie had osteosarcoma. Again, I was clueless, and had no idea what that was, until he said it was bone cancer. Mind you the other patients around me where observing this whole scene unfold. The hell with HIPAA!!! Confidentiality goes right out the window in a crisis. It was at that point my life changed forever and how I gathered myself and Mattie and walked back to the pediatrician's office is beyond me. Amazing the stamina one can develop under a crisis. Super human strength takes over. When I found Elizabeth Edward's quote tonight it literally jumped off the page at me. She was reflecting on the loss of her son Wade and trying to make the comparison to losing a limb. She felt that if she lost a limb, people would understand the impact on her life and would ask her continually how she was doing. How was she learning to walk again? No one would expect her to "move on" without a limb like they expected her to do without her son. Her quote to me is beautiful and SO SO telling and true. She captures the anger and disbelief so many of us parents who lost a child feel. I am not sure what is worse, the initial stages of grief and loss, or three or more years into the loss??!!! The issues are different but the hurt remains and in fact I believe the hurt gets compounded over time because those we would expect and hope would share in our anniversaries no longer do. The anniversaries are not even discussed or mentioned for the most part, unless we bring them up. I had various emotions today ranging from anger, sadness, to overall disbelief. When we lost Mattie our world stopped. In many ways, though we don't expect those closest to us to stop living, we almost long to know that our sadness is shared. That we are not in this sadness alone, and that Mattie is remembered by them too. This doesn't take a long conversation. This just takes two or three words. Sometimes I wonder if I am the only one facing these issues and emoting on them. Just when I am in doubt my buddy, Annie, writes to me. Annie lost her daughter to cancer, about eight months after Mattie's death. Annie and I don't live around the corner from each other, yet we see eye to eye. A crucial factor for me, because just when I feel like I am the one with the problem, that perhaps I am being too harsh on those around me, Annie validates my concerns.

A very meaningful part of my day today included visiting a recently made friend. My friend is a mom who recently lost her only child in June to cancer. For about a month now, I have gotten to know this mom and we often share many of our thoughts and feelings about this horrific grief process together. Today on our journey we walked to the Iwo Jima Memorial and Netherlands Carillon. I can't tell you how many times I have passed both of these wonderful monuments and memorials by car. Seeing them on foot and in person was very special and it seemed like a peaceful place to reflect and contemplate. Though a challenging one for my friend since her son spent many a day running around on these glorious grounds. The Netherlands Carillon is a bell tower near Washington, DC that was given to America as an expression of gratitude from the Dutch people for aid provided during and after World War II. The carillon plays recorded music that is programmed to play automatically by computer. Its fifty bells give it two notes more than four octaves. Winchester Chimes play daily on the hour between 10:00 a.m. and 6:00 p.m. Surrounding the Carillon are lush lawns, beautiful flower beds, and an incredible view of DC.

Our walk brought us also to the Iwo Jima Memorial, also known as the U. S. Marine Corps War Memorial, which honors the Marines who have died defending the United States since 1775. The 32-foot-high sculpture of the Iwo Jima Memorial was inspired by a Pulitzer Prize winning photograph of one of the most historic battles of World War II.

My friend has the gift for making jewelry and she surprised me with my own butterfly creation. In honor of Mattie's 5th anniversary of his cancer diagnosis, I think it is very symbolic that this necklace has five butterflies. Each time I wear a butterfly pendant, I feel I am capturing the spirit of Mattie and that he is with me. This necklace was a truly meaningful gift to give me today and one I will cherish.

July 22, 2013

Monday, July 22, 2013Tonight's picture was taken in July of 2008, about two weeks before Mattie's cancer diagnosis. Peter and I took Mattie to Roosevelt Island that weekend and as you can see he wanted to walk ahead of us and explore. Notice carefully that in Mattie's right hand was a stick. A tell tale sign you were walking with Mattie. Mattie always found a stick on every one of his walks and usually came home with it as well! I reflect on this photo because it seemed to capture such a peaceful and innocent time with no indication at all that within a matter of days our lives would be permanently altered.

Quote of the day: Anyone who's lost someone to cancer will say this, that you have to struggle to try to remember the person before the diagnosis happened, because they really do change - as anyone would change. ~ Mindy Kaling

Five years ago today, we were still living in the land of the innocent, the naïve, and the lucky. Peter and I experienced the usual stresses, just like everyone else and we worried about the things that parents of typically developing children face. I remember back then my biggest concerns were how was I going to teach Mattie to ride a two wheel bicycle, would I be able to teach him to read, understand math, make friends, etc. I did not realize how lucky I was to have those every day and NORMAL concerns!!! I took them for granted.I may always be saddened when July 23 approaches! As if the sadness is hard wired within me. In fact, it isn't like I go to the calendar and say.... okay it is July, so now I have to be sad. I just hits me and when I am perplexed by this, I have those around me who remind me that the sadness makes sense to them given the anniversary of Mattie's diagnosis day. On July 23, 2008, Mattie was diagnosed with Osteosarcoma. A day I will never forget. The old saying, "what a difference a day makes" couldn't be more true when contending with a cancer diagnosis. On July 22, the future seemed possible and typical everyday stresses now seem like gifts. What do I mean? When I hear moms complain about carpools, fixing lunches, homework, school events and commitments, and the list goes on, I want to stop and let them know that the alternative to their complaints isn't good. I know full well what I am talking about because I live the alternative 356 days a year, 24 by 7. Today was a full day of chores and Foundation work. I am trying to wrap some things up so that we can leave town on Wednesday. But today seemed non- stop. In the midst of running around, the highlight of my day was seeing my friend Tina. It wasn't a planned visit, which may actually be the best kind. Just a spur of the moment visit to say hello. Before I met Tina, I made the unfortunate decision to sit outside while on an hour long Foundation conference call. While sitting outside, I was attacked by mosquitoes. So by the time I got to Tina, I was itching all over. Thankfully Tina had an arsenal of supplies at her house to help me. Now I can say I am feeling much better thanks to my friend who came to my rescue!

July 21, 2013

Sunday, July 21, 2013Tonight's picture was taken in August of 2009. One of the things that helped all of us through the endless days and nights in the hospital was Legos. We would work on Legos together for hours. You did not need gross motor movement to construct and build, instead Mattie was able to use his fine motor skills and creativity to remain active and engaged. In fact, as Mattie's cancer battle progressed on, he did not want to talk with people, nor did he want to hear conversation either. The one thing that he did find acceptable was chatter about Legos, building, and of course commentary about the finished product.

Quote of the day: When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait. Life does not look back. ~ Paulo CoelhoToday has been a whirlwind for Peter. I have been sitting on the sidelines going through the process from afar. I am not sure which is worse!!! Peter woke up at 4:30am to catch a flight to Boston at 6am. Once in Boston, Peter rented a car and headed to the Ford dealership where Peter's Explorer was towed after our accident during the July 4th weekend. It has taken all this time for the insurance company to evaluate the car and to deem it totaled. I am still trying to wrap my head around how a fender bender with a large SUV, could produce such damage. Needless to say the cost of fixing Peter's car outweighs the worth of the car. From an outside perspective one could be mature about this and say...... it's just a car. It can be replaced. So move on. Well it isn't so simple! This Ford Explorer was the first car Peter ever owned. So that alone is a milestone. But moving passed that, this was our family car. This car took us on all our family road trips and vacations. There are many nooks and crannies in the Explorer that Mattie hid rubber lizards and bugs, toys, rocks, and you name it. The car represents Mattie in a way and our memories with him. So frankly this car isn't replaceable to us for many sentimental reasons.

I asked Peter to take some photos of the car today, and he sent me two. Though Peter's family lives in Boston, it was important one of us emptied out this car for ourselves. We know where things were hidden and stored! So this is the first goodbye picture.

The car looks perfect from the back, but not great from the front. Peter actually took a flattering photo of the front end, but if you could see it in person the front is squashed in, the passenger front door won't open anymore and all sorts of things within the motor have been cracked. We got this car in 2004, when Mattie was two years old. The car I drive is actually older than Peter's and I always thought mine would go first. The loss of the Explorer seems very connected to our overall loss and trauma associated with Mattie. When we lost Mattie, we (or I should say I!!!) began to cling to things. To me this car was a symbol of our family, and now it visually represents once again, how fractured and damaged we are.

Peter left Boston at 10am and is driving back to DC. Last I spoke with him, he was in NYC. So he is making progress, but it has been a long day so far. A day which will end with unloading all his things from the rental, figuring out where to store them (another feat!), and then returning the rental to National Airport. As tonight's quote so aptly states, "life sets us a challenge to test our courage and willingness to change." I for one have had it with all the changes associated with loss. They haven't ended for us once we lost Mattie, in fact, like an earthquake, there are many aftershocks long after such a big jolt and loss.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.